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Emergency Planning

What you need to know

Emergency plans will be individually determined, based on behaviors and medical issues. 

  • Although RARE, aortic dissection (rupture) can occur in children with Marfan syndrome.
    •  It is important to recognize the symptoms; Aortic rupture is typically painful and may be described as a “tearing chest pain to goes through to the back.”  Less commonly, an individual may suddenly collapse or faint.  It is important to know aortic dissection may be pain free and the only symptoms may be a shortness of breath.
    • Other signs: nausea, paralysis, parasthesia (tickling, numbness, prickling of skin) 
  • Spontaneous Pneumothorax (collapsed lung)
    • Sudden shortness of breath and chest pain can also be indication of spontaneous collapse of the lung 
    • Other symptoms include; cough, fatigue, rapid breathing or heart beat, or the skin turning a bluish color
    • Other signs of cardiac or pulmonary problems are fatigue and irregular heart rate
    • Any of these symptoms may be serious and child should be transported to ER 
  • Retinal detachments
    • If there are any sudden vision problems, including flashing lights, spots in vision, blurred vision, translucent specks of various size, shape, and consistency in eye, blindness in a part of eye or sudden loss of vision should see the school nurse. Symptoms may occur gradually or suddenly 
  • If child is on blood thinners, he/she may develop excessive bruising or spontaneous bleeding.

What you can do

  • It is important to mention new signs, symptoms, or pain to the child’s parents. 
  • Please see Marfan syndrome website for examples if emergency plans.